Monday, June 27, 2011

Blaming Parents: Autism Families Torn Apart by Ignorance

Families with autistic children, parents who love their autistic children dearly, must endure much in order to live a normal life with their children, to be happy with their children to see them grow and develop to the best of their abilities notwithstanding their disabilities. The concerns and challenges of parents of autistic children are often dismissed contemptuously by scientists, health care professionals, educators, social workers ... and some involved with the justice system.

Last week the world learned that a caring British Columbia single father lost his autistic daughter to that province's children's authorities, at least temporarily, because she had left the home unattended and wandered to a nearby home where she stayed for a couple of hours. The father had taken precautions to prevent such incidents and had run to look for her when he realized she had left the home. He called police and she was found safe and sound but still the government took his child apparently because they doubted his ability to provide her with secure care.

The Detroit Free Press has been reporting extensively (1, 2, 3, 4, 5, 6 ) on the havoc wreaked upon a Michigan family, the Wendrow family, when the parents were charged with sexually abusing their severely autistic and mute daughter. The evidence was provided by a social worker who purportedly communicated with the daughter via facilitated communication a process which in this case involved the worker guiding the child's hand as part of the "communication" process. The case imploded when the child could not answer ANY questions, in any format, unassisted. It became obvious that the information purportedly communicated by the daughter was simply the beliefs of the social worker not the allegedly abused daughter. The parents did spend time in jail and the family, including the daughter, were separated. What I find most bizarre and disturbing in this case though is how far the prosecution continued without any apparent legal foundation:

"Julian and Thal Wendrow were criminally charged in late 2007 after their 14-year-old autistic and mute daughter alleged, through facilitated communication, that her father had been sexually abusing her. They were separated from their children for 106 days, until prosecutors dropped the case because of lack of evidence.

...

The ordeal didn't end when it was clear that the girl wasn't communicating, after all. It didn't end when a sexual assault exam found no proof of abuse. And it didn't end when a prosecution witness insisted the abuse never happened."

TIME has reported on the six part investigative series by the Detroit Free Press and noted in its own commentary about facilitated communication generally, and the horrendous impact on a family of its use in this criminal prosecution of the father for allegedly raping his autistic daughter, that:

"the technique, in which the aide's hand is supposedly guided by the child to type what she wants to say, has been proved ineffective. It has been shown to rely on the aide's projections rather than to reflect the child's thoughts. Although some autistic children can learn to communicate genuinely via a keyboard with only initial guidance, facilitated communication, in which an aide always does the typing has repeatedly failed to demonstrate that the words are written or thought by the child. For example, when the facilitator is not allowed to hear the questions being asked of the child, the resulting answers are wrong or nonsensical.

When the Wendrow's daughter's aide typed allegations of sexual abuse against the girl's father and brother — and claimed that the child's mother had been ignoring her complaints — a prosecution of the family was set into motion that became nearly unstoppable. The aide refused to believe she was not typing her own ideas, even though the child was clearly not capable of the complex language being attributed to her. Once prosecutors and the aide became convinced of the truth of the allegations, even overwhelming evidence of their falsehood was ignored."

Parents of autistic children face many challenges trying to raise and care for their autistic children. Most of us face some of those challenges .. the stares and looks from strangers who do not understand the screaming of the "obviously spoiled" child in the grocery store, the educators and doctors who ignore the input of parents. Some face the grief a father is going through right now in British Columbia. Few of us face the horror of a wrongful criminal prosecution as the Wendrow family has had to endure; or the after effects they will probably have to continue to face. Behind it all though is a common thread, a thread that goes back to the "refrigerator mothers" theory of autism causation that was embraced so willingly by the psychology and psychiatry establishments, to that theory's politically correct replacement - the "it's gotta be genetic" theory of autism causation. It is easy to find fault, to blame parents, for the challenges faced by their autistic children who suffer from serious neurological disorders ... who suffer from autism spectrum disorders.

As a father with a severely autistic son, who happens to also be a lawyer, I commend the defense team that represented the Wendrows throughout the criminal prosecution. I commend the Detroit Free Press for bringing this story to the forefront when so many in the mainstream media refuse to comment on the harsher realities of autism disorders and their impacts on families. Most of all I commend the Wendrow family for staying strong, for fighting the good fight. I wish them well.

3 comments:

That this was allowed to go on the way it did is criminal in itself. How could the police NOT see that the assistant was guiding the child - not the other way around? An innocent family suffers because of someone else's assumptions, and the authorities seemed content to try and force the 'evidence' to fit the theory. Sickening. My husband and I have concerns regarding the misunderstandings of others as well. Our daughter is very aggressive (though less so than she used to be), and prone to attack our son when frustrated or upset. I've been fearful for a long time that someone would see the marks, call CPS and have our children taken away. She's in behavioral therapy now for this, but school is out, her routine has been interrupted, and I'm sure you know how that is. In addition to the 'refrigerator mother' theory (which the uninformed still vomit forth at us as if it ever had any merit) I have been told that children become autistic because 'parents coddle them too much these days'. Also, 'being a brat isn't a disability' (and other variations of this), and that god is punishing me for my sins for making my children autistic.No matter which way we turn or how hard we work to help our children, people think this is 'all our fault'. I don't even try to seek out others for moral support any more.

With children and populations with little or no personal power, the presumption of guilt must be a starting point - sorry, I can't see any way around this - better to ensure protection even if not needed that fail to protect in a situation where abuse is going on...

Here in the UK, we recently had a case where an autistic man who had been living with his father was sent to a respite centre for "a few days" because the father got ill. The council then moved him to a "positive behaviour centre" because his behaviour when surrounded by other autistic people (and others generally) was challenging. The upshot is that they were separated for more than a year, and were reunited largely because some bloggers drew public attention to it. The affairs of people with mental disabilities are normally dealt with by the so-called Court of Protection, which conducts its business in secret.

I was recently reading a book titled One Last Goodbye by Kay Gilderdale, whose daughter Lynn had very severe ME (myalgic encephalomyelitis, commonly called Chronic Fatigue Syndrome) and was bedridden (among other things) for more than 16 years before her suicide in 2008. In 1992, when she was first ill and suffering a very drastic physical and mental decline, doctors refused to believe her illness was actually physical, and repeatedly implied that her condition must be a reaction to sexual abuse. On one such occasion, some nurses chatting within Lynn's earshot made that accusation against her father. They didn't formally accuse her parents of anything, but they would use any excuse to avoid admitting that she was severely physically ill.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.